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jchris2's Recent CancerCompass Activity

  • jchris2 has created a new message board discussion

    I have had head/neck cancer radiation ending in March 2016. I had my prostate removed in 2010 by the DiVinci robot. In 2016 January my PSA count began to rise quickly. In March it was up to .49 then about a month later it droppred to .36. (It is supposed to be in the .02 rage) The doubling rate rose quickly. My urologist did some research and found that maybe, just maybe the increase was/is due to radiation on my p...

    August 31 at 3:33 AM view discussion
    • jchris2 has replied to a post on the message board

      Greg, I am trying to get my doctors to see this as well. As is said, have your medical team to work together. How to share this is a current problem. Trying to promote it. Yes good stuff here...

      August 27, 2017 view post
      • jchris2 has created a new message board discussion

        Wanted to share this to the overall cancer compass community. I was not aware of all of the after-treatment effects and how long they would last. This video forum helped; https://www.secondopinion-tv.org/episode/late-effects-cancer-treatment Chris

        August 26, 2017 view discussion
        • jchris2 has replied to a post on the message board

          Squamous cell stage 4 under tongue... 17 mos. out of treatment. (2nd cancer) Used Pilocarpine to produce saliva. This worked so well I had to cut back and finally quit when my salivary glands came back. Vietnam vet - Agent Orange exposure - '67  '68 The VA has been wonderful in medical and financial support. They even intervened with bill collectors in this trying time. Still can't taste (dysguesia) and swal...

          August 10, 2017 view post
          • jchris2 has replied to a post on the message board

             It took about a year of different diagnosis to discover a tumor under my tongue. By that time it became Stage 4... Squamos cell carcinoma. The oncologists (radiation anf chemo) told me the prognosis was good but it wwas going to be a tough go. It was very difficult receiving those treatments and has been since. However that being said I am adapting to the changes I needed to make. I 'reinvented' myself. Lost...

            August 07, 2017 view post
            • jchris2 has replied to a post on the message board

              Just discovered through research my tongue taste disorder may be dysgeusia. Found this on wikipedia. Different treatments but the less invasive may be just zinc vitamins. 8 mg per day. Going to try it. Also on wiki there are some dietary approaches.

              July 30, 2017 view post
              • jchris2 has replied to a post on the message board

                Hello All... Yes, Maho I also have similar symptoms. L'hermitisse, Peripheral neuropathy, fatigue during daytime, light headedness. Because I had a tumor under my tongue I had to have a feeding tube out in. Cosequently I lost much weight fat, muscle and bone. Went from 208 to 132 in 6 mos. 35 radiation and 7 cysplatin chemo. Last treatment March 2016. No surgery. Slowly my tongue is returning taste and the sores ar...

                July 21, 2017 view post
                • jchris2 has replied to a post on the message board

                  Yes, I have now what's called a 'woody' throat muscle texture because of the drainage. However my lymphedema therapist gave me a device which helped. She cut up small sponge pices from a moderately dense foam/sponge material. Then took some stocking material and made a bag to hold these pieces and sewd it shut. With this I hold the bag in a stretchy stocking piece that fit onthe top of my head and under my chin. I ...

                  November 30, 2016 view post
                  • jchris2 has replied to a post on the message board

                    So your post was in Oct. 2016... Today I am almost 9 mos. out of treatment. Most things taste like a science project... with a little Dijon mustard with vineigar on it.  I still take Pilocarpin for extra saliva. I am going to the ENT again because of possible reoccurance of the cancer. Have CIPN... Chemotherapy Induced Peripheral Neuropathy caused by Platin chemo drug. Every body is different and each treat...

                    November 27, 2016 view post
                    • jchris2 has replied to a post on the message board

                       I too am taking Pilocarpin and Biotene. Chewing okay but swallowing is a problem. Also everything tastes like a high school science project. Trying to find out why... Am eating doughnuts, milkshakes, pasta, vegetables etc. and anything to gain weight. However I started 8 months ago at 135 and up to 144. Takes time... Still weak and sleep alot. Now there is a new pain near my old tumor so it may have reoccured...

                      November 27, 2016 view post
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                      About jchris2

                      Patient, Survivor
                      Prostate Cancer, Tongue Cancer, Head and Neck Cancer

                      Prostate recurrence
                      Agent Orange Vietnam 1967 - 68
                      Tongue cancer

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